Living life with multiple chronic illnesses…. and some other stuff!

Monthly Archives: July 2010

Brain and Body, it has come to my attention that the two of you need to have a conversation and get to know each other. There is too much miscommunication going around here, and I am not happy about it. I am sure that neither of you are happy about it either.

Here is a list of things that I feel need to be addressed:
~The heart. My poor heart has been working over time to keep me conscious and making sure that there is enough blood pumping.
~Adrenals. I am not sure what is going on here. I have a sneaking suspicious that there isn’t enough cortisol being produced and I’d like to know why. Someone, or both, is slacking here.
~Amygdala. I feel that Mr. Amygdala has been getting no attention and therefore is acting up. Sending all kinds of messages everywhere and anywhere just to get some attention. This is affecting me most negatively and is at risk of causing a rapid domino affect.
~The Digestive System. Again, someone, perhaps both, is not doing their job(s) and it’s having a terrible toll on my stomach et. al. You guys really need to pick up the pace!!! This brings me to the next issue…
~Metabolism. There’s been some sort of slowing down that is causing much distress. It’s affecting a lot of other things, if not most. If the hormones are being blocked how is anything else supposed to work???

Body. Brain. I urge you to please work out your differences and come to an agreement so that we may all live in harmony.

Love, me.

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The following is taken from a letter written by Dr. Hal Deitz of Johns’ Hopkins University. He is currently involved with a study aimed at finding a way to medically manage the complications of the Vascular type of EDS. Such complications include aneurysms, blood vessel enlargement and rupture, specifically aorta dissection, as well as the rupturing of the bodies’ hollow organs such as the intestines, uterus, and stomach, etc.

“Vascular Ehlers-Danlos syndrome (or vascular EDS) is a disorder of the body’s connective tissue – the material between the cells that give the tissues form and strength. In vascular EDS the body lacks sufficient type III collagen, a molecule that contributes to the strength of the skin, intestines, uterus, and most importantly, the blood vessels. People with vascular EDS live with the knowledge that they will die from this condition at an age ranging from childhood to young adulthood. They are also told that there are no effective treatments. There are no medications that are known to strengthen the tissues or delay blood vessel rupture. Attempts at surgical repair are often delayed unless there is confidence that the patient will die within hours if nothing is tried. This is because the tissues are so weak that they often simply fall apart during surgery – akin to trying to sew together wet tissue paper. Of all the conditions that I care for, I hate this one the most. It not only drastically shortens the length of life, but also robs people of any meaningful sense of hope and quality of life – always anticipating that the shoe will drop at any moment.
Indeed, all too often children with vascular EDS lose any sense of ambition and purpose despite truly remarkable talents and potential. To their mind, “Why bother“.
Fortunately, there is now strong reason for hope. During the study of related connective tissue disorders, specifically conditions called Marfan syndrome and Loeys-Dietz syndrome, we learned that many issues, including blood vessel enlargement and rupture, do not simply reflect an inherent weakness of the tissues due to a deficiency of the body’s glue. Instead, the deficiency of a connective tissue protein, as in vascular Ehlers-Danlos syndrome, triggers an increase in a specific cellular signaling pathway, causing the cells to behave abnormally and to release enzymes that break down the tissues. We have early evidence that the same process is at work in vascular EDS. In mouse models of Marfan syndrome we have shown that a medication that is widely used for other purposes can blunt abnormal cellular behaviors and prevent blood vessel enlargement and rupture, leading to a fully normal lifespan. This medication is now in clinical trial in children with Marfan syndrome. It is now our goal and intention to make mouse models of vascular EDS in order to learn more about the condition and to test this and other therapies.”

Read the entire article at Debbie Vaughan ‘s blog, Coming Unglued.